This blog site is a place for Anna Jaworski, author of Hypoplastic Left Heart Syndrome: A Handbook for Parents and My Brother Needs an Operation, and editor of The Heart of a Mother and The Heart of a Father, to keep readers updated on important news related to Baby Hearts Press and important information for the heart community. For more information about Baby Hearts Press, please visit us at http://www.babyheartspress.com.

Monday, December 2, 2013

Prevalence of CHD is Higher than You Think!

Dear Heart Friends:

I am learning a great deal from hosting "Heart to Heart with Anna." I am doing research such as I haven't done since trying to find answers for a friend or doing research for a book. Now the research is to help me ask intelligent questions of my Guests, especially my Expert Guests and to make sure that I am providing the best show possible for my listeners.

So imagine my surprise when I discovered that something that has been taken for granted for almost a decade is wrong, wrong, wrong. It felt like a betrayal, but worse than that, it makes me wonder "why?" and if maybe I can shed some light on a situation that might help the scientific community get more funding for congenital heart defects.

For years we've been saying that 1 in 100 children are born with a congenital heart defect. Oh, there was some dispute but for the most part people believed that heart defects, the most common birth defect, occurred in 1 in 100 babies.

Now I know that's not true.

Dr. D. Woodrow Benson, an Expert Guest on "Heart to Heart with Anna," was one of the key investigators in a study published in 2007 in Circulation that discussed the Genetic Basis for Congenital Heart Defects: Current Knowledge. Circulation 2007; 115 3015-3038. The amazing thing about this article is that on the very first page of the paper the authors stated that ". . . the genetic contribution to CHD has been significantly underestimated in the past." Under Prevalence of CHD I was shocked to discover that ". . . it is estimated that 4 to 10 liveborn infants per 1000 have a cardiac malformation, 40% of which are diagnosed in the first year of life. The true prevalence, however, may be much higher."

Here's what surprised me most, my friends. The article continues with, ". . . For example, bicuspid aortic valve, the most common cardiac malformation, is usually excluded from this estimate. Bicuspid aortic valve is associated with considerable morbidity and mortality later in life and by itself occurs in 10 to 20 per 1000 in the general population. . . " (Bold-facing added in this blog for emphasis by me.)
What?!? The article was published in Circulation -- a scientific journal published by the American Heart Association but the American Heart Association doesn't count bicuspid aortic valve? That article was published in 2007 and yet even today, December 2013, the American Heart Association still doesn't even mention bicuspid aortic valve on the list of common congenital heart defects. American Heart Association: About Congenital Heart Defects

Here's the weird thing -- I belong to a group on Facebook called Heart Mamas and we recently decided to take part in a special project. One mama said she wanted to make ornaments for her Christmas tree and she wanted the ornaments to have our children's name, heart defects, birth dates and locations. I was stunned to see how many mothers listed BAV (bicuspid aortic valve). These mothers knew that bicuspid aortic valves were congenital heart defects . . . why aren't these defects counted in with all of the other congenital heart defects? This would make the percentage of congenital heart defects in the general population FIVE TIMES HIGHER than what we believe the percentage is.

Heart friends, it's time for us to stand up and ask the AHA why they aren't counting BAV and why more dollars aren't being spent to combat congenital heart defects. Heart defects are the number one birth defect. Let's do something to eradicate congenital heart defects - including bicuspid aortic valves!

3 comments:

Debby Gibson
said...

Hi, my name is Debby and I am 50 years old, born with CHD. I had my open heart surgeries in 1964 and 1967. I have a Dacron patch on my VSD, repaired PDA and repaired Coarctation of the Aorta.Two years ago I had my first heart MRI and surprise - they found a defect not detected with earlier technology. I have a bicuspid aortic valve! Again at age 48 I found out I have a bicuspid aortic valve. And this bicuspid valve will impact my health. It is "meant to be" that I read your article. I was filling in a health assessment on the American Heart Association web-site and took not that a bicuspid aortic valve was not on the list of congenital defects. It is not a minor defect. The valve opens less so blood doesn't go through at the proper rate and also due to the slow blood volume through the valve those of us with this defect have an increased chance of plaque build up on he valve. I will be contacting the AHA. Thank you so much for bringing more attention to this matter.

Debby, thank you for your comment. I don't understand how the organization can publish an article in it's professional journal but then decide not to count those born with that heart defect in their numbers. What I've been told by one particular doctor is that if they counted those with BAV in the numbers of those born with CHDs, the number of children born with that birth defect (which really is a general label for over 40 different kinds of defects), the number would be so high it would be alarming. Well! Then MAYBE we would finally have the government sit up and take notice and MAYBE we would have more money spent on CHD research. I still don't understand it. I hope you do well and the doctors are able to help you to live a long and fruitful life.

Can you help me make people aware of the petition I created through Change.org. The petition will go to the CEO, of the American Heart Association, Nancy Brown; asking them to include BAV on their list of "Common Congenital Heart Defects" here is the link. : http://chn.ge/1lAUNvS If you have any other ideas on how I can spread the information please let me know. I do not have a large Facebook page to work with.